I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Friday, May 22, 2015

Parents: Buy a bike helmet and fund pediatric cancer

With our children, we experience love immeasurable and infinite. Parents would go to the end of the earth for their kids, partially because we are charged with the responsibility as caregiver, but mostly because of this deep well of love and devotion.

I have been honored to share the responsibility of raising four children with Dan. If I am honest, there are times I am overwhelmed with it lately. I have often tried to explain what this 'adventure' has been like, one most people cannot begin to imagine. I have left myself emotionally exposed and completely vulnerable, out of this love for our children.

Our pediatric cancer story would make anyone's hair curl. I could share some of the details of our 6 cancer episodes to date, as I sit and write from a hospital room, and pull at your heart strings. But I am not going to do that. I will talk of my children, and of yours, in abstract and practical terms, like commodities stripped of humanity and devoid of emotional attachment.

I will appeal to that practical, pragmatic part of your brain. The part of us that is self interested and self serving, although we hate to acknowledge it.

If you have children, you likely went to some effort to have them, either investing nine months to grow them on your own, or considerable time and expense to adopt. Regardless of how it came to be, if you have children, putting aside the temper tantrums of the toddler, and moments of moodiness in the teenager, you likely want to keep them. And keep them in good working order.

I recognize that the challenges vary greatly with each particular child. The time may be coming where humans will be able to pick their make and model, getting the features and accessories of their choosing. However, this ethical debate is not relevant to our current situation. Today, we are stuck with what we have. Do not in any way infer that I have buyer's regret, because I most assuredly do not. I would gently remind you that we are keeping our emotions out of this discussion.

Kids have things go wrong with them. I have looked over these statistics, and the most frequently occurring thing that happens to kids, is that they accidentally break. Parents recognize this, and tend to be pretty careful with them. We drive them in cars with special seats and we let them ride bikes, but with helmets protecting their lil noggins. We consider them precious cargo.

But still, despite these efforts, the number one thing to go wrong with young humans, is accidental injury. This statistic remains constant (depending upon how you define young-ha!) until age 45, when cancer beats out accidents as the number one killer. Either we become more careful as we age, or our genetics start to catch up with us.

But back to the true kids, because they stop being our responsibility, long before 45. We are being pragmatic about this, remember? The second highest cause of death for children overall is cancer, only dropping below homicide and suicide, which temporarily displaces it between ages 15 and 35. So, essentially, if your child doesn't suffer an accident, you should, in practical terms, turn your attention to cancer.

The American Childhood Cancer Organization estimates are that one in 285 children will be diagnosed with cancer before the age of 20. Consider this number when you attend the next reverse raffle for your kid's baseball team. Pediatric cancer is kind of like that reverse raffle.

Cancer has achieved the inauspicious title of the leading cause of death by disease among children, only because of the fantastic progress that has been made in infectious disease. The success of the immunization program has so reduced the fear associated with polio and other diseases which had historically ripped through the population, that most parents do not even understand what contracting these infections would involve. Consequently, some parents elect not to immunize their children. It would seem that there is such a thing as 'too much success.' Amnesia begets apathy.

My child, incidentally, will be highly susceptible to these nearly eradicated diseases that now pop up on occasion, until we are able to re-immunize him after bone marrow transplant, perhaps in a year. We are absolutely forced to rely on the "herd immunity" that the parents who opt out of immunizations count on to protect their child. But I return to pragmatism, because I cannot control this trend. I could easily get distracted by fear and frustration, which are emotions, and thus neither helpful nor relevant.

So, back to cancer. As the foremost disease that kills children, cancer is grossly underfunded with only around 4% of tax research dollars at NCI being dedicated to pediatric studies. While it is true that childhood cancer is rare in the general population (The Ramers are single handedly skewing the numbers, or so it would seem) the things that could be gleaned from studying a pediatric genetic landscape, one uncluttered by a lifetime of environmental damage and mutations, is significant. Lessons learned in the pediatric setting can translate to adults, but this seldom happens in the reverse. It would behoove adults, in pure self interest, to fund pediatric cancer research to better understand the process of adult malignancies.

Furthermore, there are scandalous amounts of money invested in adult cancer "success" drugs which extend the lives of those with advanced prostate cancer by only a couple of months, as one example. As a researcher pointed out to me earlier this week, even though everyone still dies of metastatic disease in the study, the advertisement trumpets the extension of life by mere months at an exorbitant cost, as a huge success. Clearly, there is demand for these additional months, and thus, a market for these sorts of drugs. This is why pharmaceutical companies produce them. I have no quibble with this.

However, with our tax dollars, we should be more discerning and forward thinking. We should be pouring more of our resources into saving our new crop of humans and let the market drive the development of these other drugs. As the cancer rate among children increases, as it currently is, it becomes more important to find less toxic therapies, and understand the underlying mechanisms of pediatric cancer.

The smart money for parents in protecting their young investment (after purchasing a car seat, helmet, and hopefully getting their kids vaccinated) is to invest in pediatric cancer research and urge congress to increase the allocation of funds for pediatric studies at NCI.

1 comment:

I could not agree more. Why invest in adult cancer therapies while our children and their families are being subjected to toxic treatments and too much death? Where are our priorities? How can this disparity of funding actually be? Of course, it all goes to the bottom line. Money and greed. Could go on and on about this.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.